Tuesday, May 14, 2013

MS or not MS?

I went to a new neurologist at Rush Multiple Sclerosis Clinic a couple of weeks ago. I went for a few reasons -- my current neurologist seemed satisfied that I wasn't having actual relapses (the sudden loss of a function) and felt that the progression of my symptoms was just to be expected. He felt that my progression was actually slower than most and that was also a good thing.

Rush has a well respected MS program and although it was in Chicago I felt it was too far away to ask my friends to drive me to appointments. Now that Joe is retired he was more than willing to take me.

And I was hoping to find a trial treatment that had a potential to at least retard further or faster progression.

Currently the only approved treatments for MS are targeting Relapsing Remitting MS. That's where an MS patient will be suddenly hit with a new symptom. Which many times will go into partial or full remission. I don't have that. I have progressive MS. My symptoms remain approximately the same - constant dizziness, severe muscle cramping and "tics" in my legs and hands, tinnitus, and problems with double vision and focusing. In the four years since this started the muscle problems have increased from just my right leg to now include both of my hands and sometimes my left leg. My dizziness has not gotten better but my eyes have gotten worse.

So I had an appointment with a neurologist at the Rush MS Clinic. It was a long appointment. He listened carefully to my history and symptoms. He performed and at times re-performed a series of tests on my hearing, strength, balance and double vision. He checked my latest brain MRI.

And at the end he said that he questions whether I have MS or not. And he patiently explained why.

My mind went reeling. I went back to the terrible feeling before my MS diagnosis when I KNEW something was very wrong but the doctors I saw couldn't tell me what. For me this was NOT good to here.

Joe and I talked about it later. He was taking the news as a good thing. MS was a sentence of life imprisonment in a non-responsive body. Couldn't this mean that there might be something that could fix all of this?

I felt I was back in limbo. MS was a monster. But at least it was a monster I knew and was trying to prepare to live with. This monster could be anything. To me the chance that this monster could be defeated was very remote. This may be a monster without a name. And yes, I am very afraid that this may be a worse monter than my MS monster.

So far I've only mentioned this to friends in my MS internet group. I feel strainge explaining to friends and relative that I may not have MS. But then again, I may. I just don't want to go into the whole discusson until I know more.

The new neurologist is taking a cervical spine MRI and has asked for some of my old MRI's and test results. We see him again at the end of this month. I guess all I can do is wait and see.

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